CAB Steering Group Feedback

Mark McPherson

What, why and who… What: A representative group of people from

within the CAB with an interest in the future of this group

Why: To increase the number of people involved in preparing this meeting, reducing work for some and adding difference perspectives

Who: At the moment we are: Ben Cromarty, Robert James, Carmen Tarrades, Brian West….also with us in spirit were Badru Male and Fiona Pettitt

What did we do?

Looked at what the CAB has done to date

Discussed its strengths

Looked for opportunities

Planned this meeting

What do we want to do today

Feedback what we did

Get ideas for future events

Get ideas about the future role

Get ideas about how the group should be run

Aims of the UK CAB

To provide a specialist treatment training programme 3 speakers and a network sessions Speakers include researchers and companies as

well as group members To strengthen the network of treatment

workers and advocates Discussing issues and advances Community representation (eg BHIVA guidelines)

What has the CAB been up to? Established in 2002 This is the 15th meeting Past meetings have included: Trail Design;

Resistance and Salvage Therapy; Pregnancy, Fertility and Sperm Washing; Access to Services for Refugees and Asylum Seekers; Statistics; Immunology and Children

They have been delivered in the style of meetings and training events

We have an active web based discussions group

How do we compare?

ECAB - more focused on drug trial design and linkage to the pharmaceutical industry

French and German CABs - more activist based in a traditional sense involved with demonstrations etc.

Strengths Diverse and Representative

Delivers accessible information - without oversimplifying it.

Provides contact nationally (often where treatment maybe sub-optimal)

Affords community involvement in other policy forums

Opportunities Increase involvement in trials

Seek greater representation (pro-actively seeking key players to attend)

Create clearer policy lines and actions based on e-mail discussion

Be pro-active in the development of patient involvement across all Strategic Health Authority Regions

Take a view and lobby on issues regarding standard of care delivery as well as treatment efficacy

What we will do next?

Have another steering group meeting after this one to plan the next CAB

Plan how to take forward your feedback

Look at how the next steering group should be formed

Key Questions

Have you ideas for future events?

Have you ideas about the future role?

Have you ideas about how the group should be run?